Field Trip #2 | AACR Annual Meeting in Philadelphia

aacr meeting banner

Back in the day, when I headed in to the lab at Georgetown, AACR was the meeting to go to. It’s the annual meeting of the American Association for Cancer Research and it’s a huge meeting where scientists present their data. Ideas are shared, collaborations are built, relationships are made. And since I went to meetings in New Orleans and San Francisco, some very delicious food was eaten! I haven’t been in years– since graduate school.  AACR is working to increase the role of patient advocates in the scientific process, and so they sponsor the Survivor<->Scientist Program.  It gives a cancer survivor the opportunity to attend the meeting, getting to know other advocates and gaining the benefit of a scientist mentor to help make the meeting a little easier to understand.

This year, I am honored to be a part of this program on behalf of the group at Georgetown. Each SSP advocate is required to present a poster at the meeting.  It’s sort of like a grown up science fair where thousands of researchers stand by huge posters of their work.  In addition to being able to see talks by some of the greatest minds in cancer research, I’ll be able to peruse posters of the latest work going on in labs around the country and across the world.  And for a four hour time slot on Monday morning, I’ll be able to share my poster with all of them. (Or at least those who wander by!)  I worked with the ladies in the group at Georgetown to come up with a poster summarizing the role of our research advocacy group at Georgetown. Just like those dreaded group projects from high school, working with so many had its struggles– technology, waiting on information, trying to get all those ideas in! But not only am I happy that it’s done, I really do think it’s better for all the input of the group. They had some great ideas and I think the finished product will represent the group well.

I hope I’ll get to see some exciting research.  I’m looking forward to meeting so many new advocates as a part of the SSP program, and I’m hoping I might run into a few familiar faces while I’m there. A few of the other ladies from Georgetown will be joining me for the poster session, and above all, I hope that we will have the opportunity to broaden the perspective of research advocacy in the cancer research community.

So now just a few things left to do before I leave… I’ll pick up the poster tomorrow. Business cards are ready to go. Fingers crossed that Sam Torrey managed to repair the shoes my dog chewed up (oh, the horror!) so they can get packed along with everything else.  And then I’ll need to do a little cooking so that Clay can single parent it and still do a little of his own work, too.  You’d better believe I’ll appreciate a few days off of constantly making those kids food!

And if you happen to be one of my science friends or one of my advocate friends and will be at AACR, let’s get in touch!  My poster session is Monday morning, add it to your itinerary!

Share

Field Trip: FDA Breast Cancer Patient Focused Drug Development

fda (2)

I think it all the time.  I am so happy to live where I do.  Last week, after running a couple of errands, I headed up to spend the afternoon at the FDA White Oak campus in Silver Spring, MD. `I didn’t have to hop on a plane, get a hotel, and try to arrange my family’s schedule so that I could be gone for several days.  I just headed over after stopping at Tyson’s. It’s a brand new campus and everything is so fancy– much different than my visits to the FDA buildings that were on the NIH campus when Clay worked there.  The FDA is conducting meetings over a five year period on different disease sites, inviting patients to influence the drug development process.  I was there for the breast cancer meeting (obviously!) along with roughly fifteen to twenty other patients and patient advocates.  The rest of the audience was made up of academics and pharmaceutical representatives who were eager to hear our comments.  (They were not permitted to participate in the discussion, they were just there to listen.)
fda talk (2)

I thought the meeting was well organized and well run, and the FDA staff and reviewers listened very attentively and asked thoughtful questions.  Even when the discussion started to get off course, they managed to respectfully and gently guide us back– and that’s no small feat!  I had three main takeaways from this meeting.  First, I continue to be in awe of the passion and energy of the metastatic breast cancer community.  I sat with several ladies from the Metastatic Breast Cancer Network and the Metastatic Breast Cancer Alliance.  It makes sense that the women who were chosen to be on the panels were mostly metastatic patients– they’ve had far more treatments, so of course they’ve had to deal with more side effects.  Many of these ladies talked about overwhelming fatigue, pain, and the stress of trying to make sure they’ve scheduled their “life” to fit within their two or three week chemo cycles.Their cancer cards are still shiny– though be it a bit worn– and no one would call them selfish for wanting to stay at home– either to feel sorry for themselves, or just to spend as much time as possible with their families.  And yet they traveled from Chicago, New York City, Texas, California– all to share their stories, hoping they will make a difference, if not for themselves, for those yet to be diagnosed with breast cancer.  They spoke with candor about things most people would rather hide– diarrhea, depression, sexual intimacy.  They shared the joys of being without evidence of disease after treatment for multiple metastatic lesions, and they shared the disappointment of recent disease progression. While I know one person’s story is always just one person’s story, I was reminded of the power of an individual’s personal narrative.

The other two things that struck me were two of the questions posed by the FDA panel.  They wanted to know from the patients– What would our dream drug look like? Um, one pill, no side effects, totally and instantly curative.  OK, I know that’s not what they were going for!  And that’s not what anyone said, either. The most poignant answer came from Shirley Mertz, from the Metastatic Breast Cancer Network.  I’m totally paraphrasing here, (apologies to Shirley if I botch it!) but she pointed out the need for more endpoints in new drug trials.  Most trials for metastatic disease look at tumor shrinkage as an endpoint.  (Makes sense, it seems like a shrinking tumor is a good thing.) But she encouraged the FDA to consider no new metastatic lesions– tumors– as an endpoint.  She said most metastatic patients feel like they can handle their current level of tumor burden, what they all fear is the spread to new organ sites.  Her dream drug would stop the tumors in place, prevent them from going anywhere new. She eloquently presented a perspective (and idea) that I found very interesting. I really love how excited she was to share her ideas with the FDA– she wants them to change the way they do the trials and she wasn’t afraid to tell them! (And she did it with the biggest smile, you could tell she reveled at the opportunity!)

The final question that impressed me: What’s’ your deal breaker? I didn’t love that the panelist started talking about hair loss, as if there were a lot of  women who A) didn’t know that chemo causes hair loss and B) wouldn’t take the needed chemo treatment if they’d known. ??? But once I got past that, I thought it was a brilliant question.  The FDA sees a list of potential side effects for every drug, but a patient’s perspectives on how to judge those side effects could make a difference in how they look at the applications. For the most part, the discussion was pretty clearly split.  First treatment to stages I-III: there are no deal breakers.  Theses women see the treatment as potentially curative and so are willing to endure most anything for a limited time to avoid feeling later like they didn’t do enough.  Once you move on to long term hormonal treatment (anti-estrogen, aromatase inhibitor, ovarian suppression), it gets tougher, this is five or ten years of a drug for a women with no evidence of metastatic disease. Young women in particular often struggle with the side effects– early menopause, sexual side effects, depression, weight gain. For some women, these side effects are so extreme that they become deal breakers and they stop treatment.  Metastatic disease is obviously a different ballgame entirely.  The Metastatic Breast Cancer Network describes the routine simply as “Scan, Treat, Repeat.” For the most part, this cycle is repeated every three months.  Women who are fortunate to live longer than the average three years after metastatic diagnosis have often undergone numerous treatment regimens. They stay on one until their disease progresses or they are unable to cope with the side effects, and then their doctors search for yet another option.  Their deal breakers are very different, and they seem to fall into two groups. The young mothers I’ve encountered with metastatic disease seem to be willing to do just about anything, to endure any side effect that is not actively threatening to claim their life before the cancer can.  They want one more day to see their babies grow up, to get to help their daughter buy a prom dress. They just want one more day, and they are willing to suffer any amount of pain to get it.  At some point, though, quality of life becomes a much larger argument. Many present, women who didn’t have little ones running around the house or children about to graduate from high school, spoke of their deal breakers– they were tired of all the side effects and would not choose a treatment that promised them little additional time at a great cost to their body.  One woman spoke about choosing a treatment that had a more convenient dosing schedule– an injection once a month over biweekly, three hour infusions.  Sadly, the financial cost of treatment was mentioned several times, one women adding that she wouldn’t want a drug that affected her so adversely that she couldn’t keep her job– and therefore her health insurance. They emphasized that quality of life could be more important than length of life in the decision making process, and while rough side effects shouldn’t keep a drug off the market, we shouldn’t settle for drugs without considering their toxicities.

I won’t say that I think this afternoon solved all the problems that exist in the treatment of breast cancer. I wasn’t sure what to expect, and frankly, didn’t expect much. I thought it would probably be the FDA’s way of checking off a box– yes, we talked to breast cancer patients. Done. I know that cancer drugs are still going to have some pretty rotten side effects, and my talking about them won’t make them disappear. Yet I feel like the FDA panelists were truly listening, and that our discussions might influence what level of side effects they find acceptable. Perhaps they will consider adding new trial endpoints, or they will require more data on dosing to stop the “more is better” philosophy that is common in cancer treatment. The meeting is over, but the public docket is open for comments until June 2, at which time they will be summarized for the permanent record. If you’d like to add your comments, please head to their page and do so. (There are some specific questions that they want patients to address, found about halfway down the page under the “Public Meeting Information” heading. You can add your comments by clicking the blue “comment now” button at the top right of the page.)

Share

Little Reminders | Peripheral Neuropathy after Breast Cancer Treatment

image

Back when I talked about my cancer book, I mentioned that, among other things, I used it to keep track of my neuropathy symptoms.   Peripheral neuropathy– numbness in the hands and feet– is a common side effect of taxol, one of the chemo drugs I was given.  My oncologist had told me that it was something that  I needed to keep track of– it is one of the most common reasons for dose reductions or treatment delay during taxol treatment. She stressed that I shouldn’t worry about a little tingling, but to be sure to let her know if it was causing such a problem that I was dropping things or having balance problems.  (Yikes.) Fortunately, it never got that bad.  It started in my right foot– first the big toe and gradually over the eight weeks it crept all the way to my pinky toe, causing my entire fore foot to feel funny for an hour or so at a time.  Eventually, I noticed it in the fingertips on my right hand, too.  I should point out that it doesn’t hurt.  It’s not that “pins and needles” feeling when your foot falls asleep and it seriously hurts to put weight on it.  It’s more like when you’ve been outside in winter too long. (Snowy, 18 degree days like today. I’m over you, winter…) That’s how my toes felt– when you don’t really have frostbite, but even after your toes start to warm up, they still feel really weird.  A little numb, and just plain weird.

Thankfully, as my blood counts ventured up and my hair began to grow back after my last chemo infusion, the neuropathy began to subside, too.  Fewer toes and fingers were involved, it didn’t happen as often, and it didn’t last as long each time I noticed it.  I’d heard about some people who struggle with chemo-induced peripheral neuropathy for years, even forever, but figured I’d be in the lucky symptom free group since my symptoms started to dissipate so quickly.

Lately, though, I’ve been noticing that weird feeling in my right foot again. (Has it always been there and I’m just noticing it, or is it new?  Not sure.)  Usually just in the big toe and the ball of my foot, and it doesn’t last for very long.  Again, it still doesn’t hurt, and it doesn’t affect my ability to walk at all. Honestly, it’s probably the kind of thing that I wouldn’t really even notice if it weren’t associated with cancer in my mind.  But my brain has been trained to notice and note all kinds of super minor annoyances. Because cancer. Thankfully, it’s not an indicator of recurrence, it’s more like a lasting reminder of the fact that chemo does some serious damage.  Which, I guess, is just what I wanted the chemo to do, so that’s good, right?  They say (I really hate that phrase, “they say,” but there it is…) that most chemo related side effects subside relatively quickly after treatment, and rarely linger past two years.  Neuropathy is the exception.  Since mine is still hanging around, I’m guessing there will always be times when the tingling in my right foot is just another little reminder of breast cancer.

Share

On Sick Leave and Going Solo

going solo PET scan breast cancer

The teeny tiny lead lined room where my radioactive self got to hang out for a while before my PET scan

It’s been two years since I finished chemo, which means that I’ve had the opportunity to chat with lots of ladies who are going through it themselves since then.  Chatting about all the trips to chemo and the appointments with the oncologist and surgeons, many ladies have commented that their husband is coming with them to every single one.  I don’t usually offer anything at this point, but inevitably, they ask.  “Did your husband come with you to every appointment?”  I think they are all shocked when I answer no.  He did come with me to the appointments where they suggest someone come.  (That’s never good when a doctor suggests you not come to the appointment alone…)  He was there at the first appointment after the diagnosis with the surgeon, the “big” appointment with the oncologist where we discussed treatment strategies, and the appointment where we talked about surgical options.  And of course, he took time off anytime I had surgery.  But otherwise, I went solo to the appointments and took a friend to chemo.

So this is not the point in the story where you should feel sorry for me because my husband didn’t care enough to take the time off to come with me.  In those first “big” appointments, he came along and the doctors talked to both of us, encouraging us both to ask questions.  But breast cancer is my thing, I already speak that language.  What they were saying made sense to me, there were no surprises because I was expecting it all.  I didn’t need him to take notes so that I could look things up later (that’s a great reason to have someone come along, by the way!) and he knew that I would remember the details that I needed to pass along to him.  I dragged Sally along to a couple of the early diagnostics, but quickly learned that she mostly would have to wait a long time by herself.  The waiting areas for mammograms, MRIs, and especially PET scan keep the patients separate, so there would have been a lot of sitting solo– probably not worth burning sick leave.  And I have been blessed to have so many wonderful friends, it was easy to find someone to come along with me to chemo.  Clay always offered to go, and I know I wouldn’t have had to ask twice for him to leave work to join me.  And yet, I always assured him that I was fine to go on my own.

There are a lot of “what ifs” in cancer.  What if chemo made me really sick? What if it was too hard for me to keep up with the kids? What if it was too hard for me to take care of myself? And of course, there was always that lingering, always unspoken, “what if.”  What if the treatments didn’t work and I finally ended up with my body as a battleground, managing the effects of ever increasing treatments while the cancer wreaked havoc on my vital organs?  My liver, my bones, my brain? Then I would need help.  Lots of help.

I can remember years ago being in the choir room at church, where federal workers were asked to consider donating leave to a member whose husband was nearing the end of his life.  She was running out of paid sick leave, but other employees could transfer theirs so she could continue to be paid while she stayed at home with her dying husband.  That memory floated in and out of my mind all throughout my treatment.  There might be times when I would really need Clay to drive me to appointments, to keep track of medications, just to help me through my day.  I hated the idea that he might feel torn between being able to provide for our family and being able to care for our family.  I wanted him to go to work while he could, so that he didn’t feel like he had to if I really needed him.

Didn’t mean for this post to be a downer.  I was happy going to the appointments on my own.  I was caught up on local interest stories, the latest fashion, and the newest makeup trends thanks to all the magazines I read in waiting rooms.  (I’m a bit behind the times now, I’m afraid!) I really liked all my doctors, and was happy to chat with them. As soon as I left, I would call Clay, my mom, and Sally to give them all the latest updates.  And then I would usually make one more call to whomever I was meeting for coffee or lunch to let them know I was on my way. Because even though I didn’t mind seeing the doctor solo, hanging out with a friend is always my favorite thing!

One thing to remember, though, especially if you are going through treatment– everyone is different, so we all “do cancer” differently.  I loved taking a girlfriend along to chemo– three or four hours to chat and catch up, discuss Downton Abbey, look at magazines, and giggle like girls do. I’ve had friends who loved spending that time with their husbands, looking at it almost like date time.  Maybe not the most romantic, but time is time, my friends.  And I’ve had friends (mostly those with toddlers at home!) who cherished being able to go to chemo completely alone. We don’t all have to do it the same to do it well.

Share

Happy Birthday to Me | NARS Lip Pencils from Sephora

 

image

My birthday is in December– quite frankly, I can’t believe that I’m 38. That just sounds older than I feel. Not that I’m obsessing about it at all, but some nice presents surely make it better!  I do love shopping at Nordstrom, but when it comes to cosmetics, I’m starting to become a Sephora convert.  They have a similar generous return policy, and they have a beauty insiders club that lets you earn points for really nice rewards– smaller sizes of some of their best products– things I actually want!  But best of all are the annual birthday gifts.  I discovered several of the products that I now love and faithfully buy that way– Watts Up highlighter by Benefit and Sugar Fresh lip balm are probably my favorite birthday gifts.  Until this year.

I’m a huge fan of NARS cosmetics– they are highly pigmented and deliver deep, lasting color.  The velvet matte pencil in Cruella is the red lip color I’ve been looking for– a bold red with just enough depth so that it’s not obnoxiously bright.  The satin lip pencil in Rikugien is more of a neutral, glossy color that’s a great everyday staple.  Two new lip colors– a perfect red and a glossy neutral– make me a pretty happy birthday girl.  Happy birthday to me indeed!

*This is the 2015 birthday gift– even though I was celebrating my 2014 birthday, it was January before I made it in to Sephora. Having noticed my love for NARS, the sales associate let me choose, and of course I went home with this one!

Share

Me and Ibuprofen? It’s Complicated | Pain Relief after Breast Cancer

ibuprofenI woke up the other morning with a headache. Back in the day, I’d have groaned about it while I walked to the kitchen, popped a few ibuprofen, and then I’d get on with my day. But now? Well, it’s complicated.  To be perfectly honest, I’ve always had the occasional headache, only rarely would they last after I took a few ibuprofen. The last time I saw my oncologist, she asked about headaches and I told her that I have them occasionally. Of course, she asked whether they went away when I took ibuprofen, and I had to admit that I don’t really take it any more. I knew she wanted to know because a headache that is controlled by over the counter meds doesn’t indicate a scan-worthy concern.

So why won’t I take ibuprofen? It’s not because I’m anti-meds. Of course, I know they can be misused and abused, but I’ve always been one to (responsibly, of course) embrace whatever the pharmaceutical industry can give me. (Narcotics, an ambien, and an epidural made for a nearly blissful birth experience!) But since I had cancer, I hesitate to take something even as mundane as ibuprofen.  Not because I’m tired of taking pills and just don’t want to anymore. Though I think that’s a pretty reasonable reaction.  But once she had asked, I had to admit the reason out loud.  I want to feel the pain.  Not because I want to suffer.  But because I want to know just how much my head hurt, and for how long.  I feel like if it’s the start of a problem, I want to know right away.  Of course, my oncologist told me what I knew deep down. I should take the meds.  What I need to worry about is pain that can’t be controlled by the meds or that lasts for a couple of weeks.

So the other morning when I woke up with a headache? A quick check of my P-tracker (yes, there’s an app for that) told me that it was most certainly a PMS headache– something I’ve dealt with since long before I had breast cancer.  So I took a deep breath, told myself not to worry about it, and swallowed my ibuprofen. And what do you know? The headache went away.

Share

Two Years and Counting | Post-chemo Pixie Grow Out

pixie grow out run lipstick chemo

We all have dates that we remember.  Some very important, some rather mundane.  I could never remember dates for history class.  But I’ve got a slew of dates floating around in my head.  March 8– my first date with Clay.  May 1– the day I had to finally send in the acceptance to the University of Illinois (it was not my first choice for college, but I couldn’t get the scholarship support to go elsewhere.) July 18– my first best friend’s birthday, and we haven’t lived in the same town since first grade.  October 5– the day I found out I had breast cancer.  February 1– my last day of chemo.

Wow, that was a lot of writing to get to the “it’s been two years since my last day of chemo” line.  But, there you have it.  Two years from completely bald to Rapunzel-like hair.  I was shocked last week when someone compared my hair to Rapunzel’s– I was thinking of the long blond braid that reached to the base of the tower.  Apparently in Tangled, her hair is cut at the end of the movie, and as it turns out, my newest style looks very much like hers.  (Like how I tried for a concerned, wide-eyed stare just like hers?)  And here, I thought growing out my hair would take forever.  All I needed was two years to get hair just like Rapunzel’s.

Share

On Being Med-Free | Tamoxifen and Long Term Breast Cancer Treatment

run lipstick chemo tamoxifen breast cancer

Forgive the old picture, but I don’t have any current pics of my meds.  Because I don’t have any meds.  Which is sort of a blessing and a curse.  It’s great that I don’t have to remember to fill a prescription and remember to take a daily pill.  It’s really great that I don’t have to deal with side effects.  What’s not so great, you may be wondering? I’m not actively doing anything to help prevent a recurrence.  If you know someone who’s had breast cancer and finished her treatment, odds are good that she’s taking a pill every day for the next five or ten years, and so it’s an obvious question to wonder why I’m not.

And this is where we go back to the science.  Remember when I explained about how my breast cancer is called triple negative? (Yep, if you look at that post, I used the same picture! Sorry!) Pathologists look at three main receptors when classifying breast tumors: ER, PR, and HER2.  Since my tumor didn’t have any of the three, I am considered “triple negative.” Tumors that express ER or PR are considered hormone responsive, and they make up 60-70% of newly diagnosed breast cancer cases.  These tumors use estrogen to grow, which means that shutting down their ability to use estrogen can shut down tumor growth.  No tumor growth means your tumor won’t kill you.  Obviously, hormone-targeted therapies have made a significant impact in the management of hormone responsive tumors.  There are several ways to manage hormone responsive tumors long term.  Tamoxifen is the most commonly known, and it acts as an anti-estrogen in the breast and effectively shuts down estrogen signalling.  Other drugs (raloxifene, toremifene, and fulvestrant) work in a similar manner.  Aromatase inhibitors halt the production of estrogen (letrozole, anastrazole, and exemestane) and can also be used to starve the tumor of estrogen.  (Fun fact– a woman’s body uses testosterone to make estrogen using an enzyme called an aromatase, so aromatase inhibitors prevent that conversion).  In premenopausal women, ovarian ablation (with drugs like gosserelin or leuprolide) can be used in conjunction with aromatase inhibitors, and have recently been shown to be very effective.  These treatment regimens are long term– five years used to be the standard, now some studies indicate ten years is even better– and are not always tolerated well.  Like any treatment, some women don’t have many side effects, but for some women, the treatment causes significant quality of life issues leading them to choose to stop treatment.  (This is certainly not a decision to be made without talking to your doctor! I’m just saying that it happens, good or bad…) Most women deal with some side effects that fall into the undesirable category, but are considered a reasonable trade off for the reduction in risk of recurrence.

All of that is to say that at least 60-70% of women treated for breast cancer benefit from long term hormonal treatment.  But for those of us without hormone responsive tumors, there is no reason to take the meds.  Our tumors don’t use the estrogen, so blocking it won’t help us.  And herein lies the blessing and the curse.  I don’t have to take daily meds and deal with the side effects, which is awesome.  But I’m also left in the position where there is no medication that I can take that will reduce my risk of recurrence, and that’s a little less awesome.  I’m just going to count on the fact that the chemo did its job and keep running, running, running.  (I do wish it would warm up, though.  It’s a little cold and icy to enjoy running right now!) I can’t take tamoxifen to help me, but exercise has been shown to reduce recurrence risk.  And so I will run.  As one triple-negative friend put it: “Running is my tamoxifen.”

For a more complete discussion on hormonal therapy for breast cancer, check out what this fact sheet from NCI (National Cancer Institute).  It’s complete and not overly technical.

Share

The Great Pixie Grow Out Continues… | Hair Growth After Chemo

post chemo pixie grow out run lipstick chemo

At this point in the great pixie grow out, my hair pretty much looks different every day.  This afternoon I pulled on my trusty smartwool beanie to head to the bus stop, and I decided it looked kind of cute. I mean, if it’s good enough for Tom Brady to wear to a press conference, I should be able to leave it on inside, too.  Mine’s not quite as vintage as his stocking hat, but since it’s the hat I bought what seems like another lifetime ago as I prepared to lose my hair, we’re going to go ahead and call it vintage.  It does look a bit cuter now with some wispy hair sticking out than when I had it pulled tight over my bald head, but it served me well then, and it’s still a handy little hat.

growing out a pixie run lipstick chemo

Since it really started growing, I have been getting my hair cut every 5-6 weeks because it gets so bulky, and I’ve always wanted my haircut to look intentional.  It would be a little longer if I’d have just never cut it, but I’ve really loved a lot of the styles that I’ve had along the way, and it never looked like an awkward grow-out phase.  But when I got my haircut just before Christmas, it was starting to get long enough that it wasn’t quite as bulky, and the haircut didn’t help the shape nearly as much.  And so I did something very brave. Or very stupid. I set my next haircut for 8 weeks. (Which is two weeks away.)  Yikes. Lately, I’m wearing it straight more than I’m sporting the polished weather girl coif, and occasionally I bust out the sprouty pigtails or the trusty bandana.  I have another new style that someone compared to a Disney princess (you’ll never guess!) that I”ll have to show off next week!  Stay tuned for more fun as the great pixie grow out saga continues…

Share

Perky or Just Dense? | Breast Density and Breast Cancer

I really enjoyed attending the Society for Women’s Health Research meeting on mammography last fall.  Since I’m still not old enough to really need a mammogram, I never spent much time worrying about one, or wondering what it would be like or what the results might be.  Of course, women will always worry about the discomfort of the procedure.  And then there is the anxiety of awaiting the results.  My mom gets her mammogram done at a breast center where a radiologist reads the film while you get dressed and then discusses the results with you that day.  If there are any follow up procedures (ultrasound, biopsy, additional mammogram images) they’re done before you leave.  That is FABULOUS. And also super rare.  Usually, you get a letter in the mail a week later, and it’s not always all that easy to interpret.  Depending on your state, this letter might include details on your breast density, but it doesn’t tell you what breast density means to your health.  Information without context.  That seems useless and entirely unfair to me.

The above image shows what density looks like on a mammogram. While we think of younger women having denser (or at least perkier!) breasts, that’s only partially true.  You are more likely to have dense breasts if you’re younger, but there are plenty of old women who have dense breast tissue.  (Perky does not equal dense.) Breasts are made up of fatty tissue and the ducts and lobules that make milk– more ducts and lobules make a breast more dense. Normal fibrous tissue also contributes to  breast density. Just like an x-ray shows bones through the skin because they are so much more dense than muscle, etc., a mammogram film shows a tumor as a white mass because the tumor is more dense than the surrounding tissue.  In the fatty breast (medical term, no judgments here!) you could clearly discern the white mass of a tumor, right?  But on the far right in the dense breast? How can you tell what’s dense tissue and what’s a dense tumor?

The problem with dense breasts is not only that a tumor is harder to see with traditional mammography. The other problem– women with dense breasts are (very slightly, don’t panic) more likely to develop breast cancer. So, more likely to get cancer which is harder to identify with traditional screening.  Not so good.  Women with dense breasts are often called back after traditional mammography for an ultrasound, which is an effective way, together with the mammogram, to discern tumor from normal, dense tissue.  But as I learned at the Society for Women’s Health Research meeting, the use of 3-D mammography makes a huge difference to women with dense breasts.  Not only does it reduce the recall rate for additional testing, it finds more cancers.  If there is a tumor, it’s more likely to find it, but it’s not likely to send you for additional tests that you don’t need.  Win-win.

So the take home message? Pay attention to that line on your mammography report.  Don’t worry about it, but if you are in the “dense” category, consider the 3-D mammogram next year.   And if your doctor recommends that you come back for an ultrasound after a traditional mammogram because your breasts are dense, don’t worry too much about that either, it’s not likely to be anything, but will be able to tell you for sure.  Just don’t let the fact that traditional mammography isn’t as effective for women with dense breasts deter you from your annual mammogram.  They really do save lives, whether you are perky or not so perky, dense or fatty.

Related Posts Plugin for WordPress, Blogger...
Share
Follow

Get every new post delivered to your Inbox

Join other followers: